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Association to raise awareness on skin disorder

Many Malaysians, who were born with ichthyosis -- a rare and incurable skin disorder -- suffer silently from low-self esteem, contributed no less from a lack of understanding and acceptance from the public.

Deputy International Trade and Industry Minister Datuk Mukhriz Mahathir, who is also an honorary member of Kedah Ichthyosis Patient Welfare Association (Perkid), yesterday urged the community to increase their level of understanding towards ichthyosis and to be more supportive of such patients.

"The community does not need to be afraid of those who are suffering from ichthyosis as the disease is not contagious.

"Their understanding of this illness is low. The association will play its role to raise awareness among the public.

"We need to educate them so that they would be more accepting towards those who need their support."

Ichthyosis refers to a family of genetic skin disorders characterised by dry, flaky and scaly skin that is thickened or very thin.

Ichthyosis is known to affect people of all ages, ethnicity and gender.

The disease usually presents itself at birth, or within the first year, and continues to affect the patient throughout their lives.

Mukhriz believed that once there was understanding and acceptance of the illness in the community, the next thing to focus on was rebuilding the confidence of ichthyosis patients, so that they could "come out " and mingle with others again.

He said this to reporters during a press conference after attending a gathering of ichthyosis patients with the community, a programme held at Stadium Darul Aman here yesterday.

He said Perkid would also study the methods used by the Foundation for Ichthyosis and Related Skin Types (FIRST), a United States support group, as well as another United Kingdom ichthyosis support group, to see if they were suitable to be adopted here.

These groups were pioneers in supporting and looking after the welfare of such patients in their countries.

Perkid chairman Mohd Firdaus Mehat 37, an ichthyosis patient himself, said Kedah had about 50 people suffering from the disorder.

He, however, believed the actual number could be higher as he believed some had not come forward.

"We have heard of a case where a 54-year-old patient was too shy to face the public, which led to depression.

"We urge the public to come forward and show their support so that these people do not feel left out."

He added that there were about 700 patients nationwide.

About 100 people attended the gathering, including members of Sahabat Ichthyosis, which comprises non-governmental organisations like the Northern Bikers, Pendang Audio Club, Wira Aeroback Club, Waja Club, Proton Wira Club and Kelab Pemilik Saga Iswara.